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Maisy is obsessed with cameras right now.

She wants to take pictures of everything.
If she sees a camera or phone she needs it, and will fuss and sign please until she gets it.
So, a few mornings ago, I left the camera sitting on the kitchen counter. I heard some noise at 6:30 AM and came downstairs to find Maisy sitting on the floor with the camera.
She had pushed the stool over to the counter, turned the camera on, snapped a few shots, and then moved to the floor with it to take a few more.
Thankfully she is gentle. Now I put the camera in the bag, up on a shelf every night. I would be lost with out it, or her.

A Shaky Night

Maisy had a seizure this morning. Actually it was more in the night than the morning, and had she not crawled into my room and touched my arm; and had I not pulled her into bed by me to warm her up before taking her back to her own room, I never would have known she had a seizure at all. But with her snuggled up next to me I could feel her little body tremble and when I turned to see her face, I could see the twitch in her features. It seemed to go on forever, but I'm sure it was just a minute or two. I carried her downstairs where I could turn on some lights and check on her. She snuggled in my arms and smiled, a little lopsided smile. She stayed semi-responsive and maintained her breathing the entire time. And now she is happy and laughing, jumping with support from the couch while the Clubhouse crew sings the "Hot Dog" song.

I know she will be fine today, but now the questions come. What is going on? Is she having seizures that I don't know about? If she recovers so quickly could this be going on often? How do I let her out of my sight? How do I let her sleep at night without being right there?

I guess its time for a trip to the neurologist. I'm dreading it. We have had good neurologists and bad ones, and I haven't visited an EEG lab in quite a while. The head full of little probes, the erratic lines scratching hills and valleys on the monitor, all so you can know what "somewhat, may, possibly, but it is hard to tell, kids are resilient and they have room for growth and your daughter has been through so much already, neurology isn't an exact science, but it seems that maybe, judging by various tests," might be going on in a mind we don't completely, fully understand yet.

Then comes the phenobarb, I'll ask for keppra instead. There will be tears from both Maisy and I (hopefully I can keep mine in check until the car.) We might hear extra initials, besides the EEG, like MRI and CT. We'll possibly have an overnight stay for observation, where I will try to keep everything "as normal as possible" while I try to get a five-year-old wearing a hairnet of probes to sleep in a strange white room with light coming from monitors and computers instead of windows. I hope they won't try to put her in a crib, she'll hate that.

Well, soon the tell-tell post seizure lethargy will kick in and I can lay down next to Maisy and get some sleep. Then the ramblings will go from my computer to my dreams. Ah, the sweet dreams of worry.

Some Days and Others

Yesterday was a good day. It started out kind of rough, especially on my back. Maisy wanted to be held most of the morning. Her teacher wasn't at church, and she wasn't too happy about being with anyone else. There was one teacher for four little ones and Maisy would tip the scale too much. So she came with me to my class. Not ideal, but okay.

Then we had family over for dinner and celebrated Maisy's birthday. She loved the attention and the presents and she ate a cupcake. I think the highlight might have been the balloon rockets.
Then today. The morning was spent being late for one thing after another. Evan is on-call all day and night. Somehow I missed Maisy's bus, luckily my mom was driving by and was able to get her before the bus driver took her back to school. (They were fifteen minutes early to pick her up, so maybe they were early dropping her off as well.) But the topper was nap time.

Now I realize that the five-year-old in Maisy does not want to wear diapers. But the ten-month-old gross motor skills (primarily, poor balance) limit her ability to potty train. So instead of going in her diaper today she took it off and went on the floor. Then she got out the wipes and tried to clean herself up. Then she went about playing diaper-less. There was poop everywhere. I hate to even write this for the imagery it conjures up. But it was everywhere! I just want this day to be over, but in the craziness of borrowing a carpet cleaner and trying to wipe down walls and furniture, I got behind in her feeding schedule, so I will be staying up late tonight to try to catch up. So I guess some days are just easier than others.

Words... where are you?

One of the things I'm learning from Maisy is that its hard to learn new things. Sometimes when I'm making dinner I add a little of this and a little of that and it turns out great. But then I go back and I can't recreate that first time. Language must be the same way. We make a sound and it is right and it sounds good and we form a word. But then we try to find that sound again and we can't.

Maisy reminds me everyday of how miraculous it is that she can learn new things all the time. I am so much better at persistence and follow through as I watch her work so hard for everything. Her fortitude and courage inspite of her limitations, keep me on track.

Jack reminds me of the miracle of normalcy. Children everywhere are saying first words and taking first steps, and no one has to encourage and coax it from them. There were no therapists involved in the process, no extra equipment or braces, they just did it because it was the next step in their development.

Our bodies are amazing, our health is a gift, our strength is a blessing, and I hope we remember that and love every day we are able to move and communicate. For now I am so excited that Maisy is discovering words. I hope that she remembers how to form the words she finds. If it takes another week or more before I hear those words again, well that's okay. She is trying and she has the desire. And that's the first step.

Good Girl

Maisy had her first day back at school. The classroom was new, the teacher was new, the location was new, the building was huge and new, but school was old hat.

She loves school, it helps that she has the same bus driver, same speech therapist, and a lot of the same assistants. After she got home and we played the yes/no game to find out about how her day was, I took her upstairs to rest.
We played our usual up the stairs game, where every time we walk past a mirror or a picture of Maisy I say, "Who's that pretty girl?" and she pats herself and giggles, by the time we get to the top of the stairs and the last picture she is laughing hard. Yesterday, as we went through our game, she wasn't patting herself or giggling, instead she was making a noise in the back of her throat. Finally, I asked her the question and she said, "GIRL!" Plain as day! And when I got excited and said, "Good girl." She said, "Good girl." We are so excited and if anyone in the whole neighborhood hasn't heard it yet (you mean I didn't call you and make you listen) next time you see Maisy encourage her to say it.

And I couldn't resist Maisy's bus driver, isn't he cute.

Shoshone Falls

We ventured north to see Evan's sister and her family. And made a quick stop at Shoshone Falls on the way. Up until we were right above the canyon Evan wasn't sure it would be very impressive, But then the seen change from flat grasses to staring down a deep canyon before you even know it exists. We drove down through the canyon to find the falls, it was beautiful.

The kids were grateful to get out and stretch their legs, and impressed by the view.
One of my favorite things about family vacation is that Sadie and Ella get along so well.
I would love to go back and do some hiking around the canyon. It is amazing to see this massive canyon that has been carved by the Snake River. Definitely worth the stop.

In the beginning

When I was little I loved to visit the school where my parents went to college. We would shop in the bookstore and eat in the cafeteria. I loved walking around campus and seeing all the students. My dad would always say, "Here is where it all began."

Since we are a short drive from Evan's alma mater (undergraduate) we took the day and went to visit. On the way there Sadie asked if we would meet any real students and we assured her that we would see some if not meet them. We went to the bookstore and got t-shirts.

We got ice cream in the cafeteria and sat in the shade to people watch and eat ice cream.
I think Ella felt a bit sophisticated to be at college.
We went to the science building to see the hands-on exhibits.
And then strolled around campus.
It was fun to be there, even though I didn't go to school there. (Maybe some day we'll make it up north.) Sometimes I miss the energy of those days, but I don't miss the insecurity.
Evan was going to school here when we met. So I guys you could say this is where it all began.

A Circus/Carnival

Between trips and work, we had delayed Ella's birthday party until almost a month after her birthday. Who knew we would have to worry about the weather in August. Unfortunately it started to rain just as we were setting up.

We moved the photo booth inside...
and I loved the pictures we got.
Ella was a lovely tightrope walker.
Even Evan got in on the action.
We had some games inside
and some games had to stay outside.
There was face painting (we decided they had to stop eating their popcorn when they got their face painted, whoops)
And a pinata.
So in spite of the off and on rain it turned out great. Happy birthday princess.

Daddy's Boo Boo

Evan went in for arthroscopic surgery on Thursday and it turned out there was a ridge of cartilage that needed to be removed. Something he painfully discovered in training for this and this.

Unfortunately, this is how you convalesce at our house. Every time he sits down to ice it he gets mauled.
Hopefully work is more relaxing than home. At least he is close to physical therapy.

Most people know that our third child, Maisy, had complications that led to her current special needs, but I sometimes get asked what those complications were and I often get asked about what happened in those first six months.

Maisy was born with Transposition of the Great Vessels (TOGV) and her vital organs were not receiving oxygenated blood. She had Open Heart Surgery (open, meaning that she is on bypass during surgery so that her heart is not functioning during the procedure) at nine days old.
Maisy then developed an array of complications following her initial surgery that led to many more trips to the OR and Cardiac Cath Lab, as well as other steps to save her life. Her lungs collapsed on multiple occasions, she developed infections in her blood stream as well as her heart, she had a pulmonary embolism and a clot in a major vein that carries blood from the upper portion of the body.
Long term ventilation required a tracheostomy, a need for IV access meant a trip to the OR for a special port that offered direct access to her heart (her veins were collapsing.) It was a long six months, with Maisy and I living about five hours from Evan, Sadie, and Ella for most of the time. Sadie and Ella would come to stay with me periodically and our Moms were a wonderful help to us.

We still have the occasional drama and Maisy has developmental delays, but things are progressing and changing. We no longer have six specialists that we visit almost monthly, we are down to yearly visits to two, sometimes three. Maisy had her trach removed just before her third birthday. She has a wheelchair, but gets around quite well by crawling and coaxing unsuspecting friends into carrying her. She signs and has a few "words" to let us know what she wants.

Maisy is a miracle and a blessing and reminds us everyday of the strength we have within us all.

The North Pole

Up in the mountains, above Manitou Springs, is a little amusement park called the North Pole. My kids can ride pretty much every ride, if not by themselves, then with an adult, so, kid heaven.

While we geared ourselves for the inevitable spinning, we decided to take the train around the park.

Aunt Jocelyn and Autumn happily waiting.
The girls on the train.
Maisy on the train.
Sadie need to ride a reindeer on the carousel, we were in the North Pole after all.
This is the highest ferris wheel in the US, not the tallest, but because of the altitude, the highest.

The little lady bugs wiped out most of the adults. Something about sitting backwards and going in circles agrees better with kids than parents.

Jack and Grandpa Christensen drove the car.
I thought this ride would do me in.
Turned out it was this one that did the trick.
I think Evan might have had a little more fun than he wanted us to believe.
Besides Santa (whom we missed seeing this year) this frozen pole gives the park its name.